ERECTION PAIN/MARRIAGE SOON (Whoaday's Case)

[Jay]

Hi there,

Flare ups are normal in the early stages of physical therapy, and they often trick people into quitting before the reward sets in.

Having said that, I am not a health care provider in any sense. You really need to discuss these concerns with your physical therapist. It's important that the two of you have a very open and trusting relationship. That way, she can reassure you when you have concerns, or refer you to a physician if she feels that it's necessary. It'll also help you relax instead of worrying a lot about being treated, which will just instantly recreate/ratchet up your anxiety and tension.

[coppertop]

From my experiences with TP therapy, it varies. There were times it made my symptoms worse for that day and a few thereafter, and sometimes there was no change. I found it helpful to keep a journal where I rated my pain, urinary urge, kept track of foods I ate, exercise I did, and any medicines I took that day. That way it is easier to see a longitudinal change.

I find it interesting that you mentioned that after using the TENS unit you had butt pain. I started having my symptoms of urinary urge/Frequency/pain in April of 2008. I started Pelvic Floor TP therapy in July of 2008. Symptoms were slowly improving. In August of 2008, she used some ultrasound heat on my butt, and since then I have had terrible pain in the piriformis area and buttocks on both sides, especially whenever I sit. I don't know if the ultrasound was to blame (it seems highly unlikely) but it has been nearly 10 months now of that pain which is my predominant symptoms. The urinary issues subsided (but didn't completely go away) after the PT.

Good luck to you. Stick with the therapy.

[Whoaday]

Thanks everyone for your words! I just got back from my honeymoon and am back at work. I made it from Saturday-Wednesday (this being my first time(s) having sex) with little to no pain. Thursday however, I had the butt pain again. I know there is a connection with the muscles that help the penis erect, the perineum and the butt muscles. I assumed this would happen. However, for me recently I have been having this weird feeling of wetness inside. It's not bloody or anything, just feels like I have to go (urgency) have a bowel movement when I dont. It started as the golfball months and months ago and turned into this. When I typed in the wet feeling on google it came up with Rectal Prolapse. As I am like most of you, I have a tendency to think the worse, this sort of scared me as it seemed to describe my pain. Most of my issues are focused in the rectal area (piriformis, pain at the anus, levator ani). I also read on the prolapse page though that IBS can cause similar symptoms. I have had IBS for years, and have been trying to work on that, but I'm just wondering what else to do. My new wife and I would like to have sex, but as WONDERFUL as it is, it hurts. I would say there is probably a little anxiety about it hurting in there as well which isn't helping.

In other news, I was referred to another PT by my previous one as she wasn't comfortable with going internal, and this one is the bomb. She told me somethings I had never heard of though. So far I saw her for an eval a week before the wedding and I believe just the little she did helped for that week in a half. She said my diaphrams (there are many) specifically my pelvic one was clogged, and that this is part of my problem. Also, even though going to a Chiro to fix these issues, my pain is mostly on the right side and my pelvis appears to be not only out of alignment, but raised forward and tilted. This could be part of it? She seems really good and is actually at a new Myofascial release clinic now, comes back tomorrow, and I am her first patient on Thursday.

Does anyone have any comments or advice on anything mentioned here?

And for those of you who have dealt mostly with the rectal pain (when sitting) or the feeling of wetness or having to go all the time, what contributed most to that not hurting any more for you. I get the stinging when I pee and what not and seem to reproduce that when doing perineum massage, but its no where near as bad as the rectal pain, which is now no more than a 2 when it used to be a 4 or 5, but I would love to hear what resolved it for those of you who have dealt with the rectal part more than anything else.

Thanks so much,

Whoaday

[Jay]

Hi there,

Firstly, congrats on your marriage! I'm glad that you went through with it and were able to enjoy your Honeymoon.

First piece of advice: stop going to medical websites. That includes Google, if you're searching symptoms. Seriously. When I first went chronic, those sites were nothing short of mental torture for me. Leave the symptoms for your doctor/PT to think on.

Having said that, I remember going through a period last year where I constantly felt like I needed to have a bowel movement. Of course, I really didn't. My PT identified the problem over the phone as (I believe) classic levator ani spasm. When I next visited her, she addressed that and it hasn't returned.

I'm really glad that you've been sent to a therapist who is skilled with internal work. They tend to be more involved with our problem, by virtue of the lengths they're willing to go to in treating it! Pelvic misalignment can definitely be a contributor to our issues, and it's something I also had. In fact, it seems to be very common in our group.

I suggest giving the new PT some time. She can't have been working on you for long, and it can take quite a while to resolve these problems.

[Whoaday]

I have a quick question, and Webslave, I'd particularly like to hear your thoughts on this. I've had IBS since I was little like I may have said before. For the first time in my life, I decided to full on go on an IBS diet for the past 4 days, and it's difficult. I got the IBS cookbook from Heather... I think it's Eating for IBS. I am confused on a few things however. She states that in general one should HARDLY ever or really never eat red meat, pork dark meat et cetera. However, I've always been a steak guy and it didn't really bother me. I've gotten off of dairy, gluten, et cetera. She says to keep gluten in very small doses if you must but recommended sourdough bread which is wonderful. MY issue is this. I have pelvic pain like most of you. How do I know that my pain is food related? What should it feel like. Whether I eat or I don't eat I get pelvic pain (mostly on the right side) and so I don't know if certain foods are causing it. I get the elimination diet. But, I eat things like regular white meat grilled chicken and it seems ok. Another time it may hurt. I eat Tostitos, those should be fine, but sometimes it hurts. It's like its on the bone on the right side, but as I said I have that (on occasion) whether I eat or not. IS the irritation a bladder thing? Because by eliminating citrus, caffeine, soda, et cetera I really havent had the stinging pee at all.

So basically my question is what to look for specifically as in what type of pain. I'm sure that's not easy to answer, but it's the question I have. If I went currently by the pain, then I would never be able to eat one thing as there is pain there regardless.

Just wondering, any insight would be great!

Thanks,

Whoaday

[webslave]

She states that in general one should HARDLY ever or really never eat red meat, pork dark meat et cetera. However, I've always been a steak guy and it didn't really bother me. I've gotten off of dairy, gluten, et cetera. She says to keep gluten in very small doses if you must but recommended sourdough bread which is wonderful.

Her advice is confused. You cannot avoid gluten by eating sourdough, which has as much gluten as other breads. I suggest you read this book instead

Food Allergies and Food Intolerance: The Complete Guide to Their Identification and Treatment

How do I know that my pain is food related?

If you have IBS, it's likely. Do you have allergies? Do you ever react to foods (any of: dyspepsia, stomach pain, headaches, throat-clearing after some foods, hiccups, and many more symptoms, etc)? If yes, then you need to get the book mentioned and go on an elimination diet.

[Whoaday]

Webslave (and whoever else),

I have some questions...

I've had IBS all my life pretty much, as I have said, and obviously since I developed the pelvic issue things changed. I've had headaches, and stomach aches, but never have I had pelvic pain because of food. I've been doing the elimination stuff, but I don't know what I am looking for. So my question(s) are, at least in your experience...

You have talked about pelvic pain with gluten, what does it feel like? I get pain in my pelvis around the hip area on the side...is that food related? You talked to some one about red meat and said they most likely wouldn't have an issue unless they were intolerant to it, but classic IBS prevention says no RED meat or very limited...but is red meat ok for you? I just don't know what pain to look for, I get the headaches and the stomach aches, but this pain in my hip, I think is just related to the condition. Obviously changing food won't make the pain go away, because stress and anxiety go along with it so I'm trying to figure out what the pain may be like.

Also, does it cause that pain in the rectum? I still have the sitting pain in the piriformis and Ob. internus,? and that pain right at the anus opening, along with urgency in the rectum, and still much frequency in the urinating. I urinate a lot, and I mean a lot (I had to go 4 times in a 3 hour movie tonight) but it doesn't sting anymore.

Is my rectum pain that i describe, (the pain right at the anus, pain all around the butt, that wet feeling like I have to go a lot,) normal for CPPS?

It may seem like it, but I am really doing better at controlling my stress and anxiety, I am simply asking so I have better clarity. I've been working with my PT about knowing where it hurts, but it's amazing. She has a different approach. She deals a lot more with the autonomic nervous system, saying that most medicines don't work on it (primarily why I never found relief from medicines, even Valium).

She also said with her specialized training in pelvic pain she learned that many with this kind of pain cannot handle much if any internal treatment, so she's been treating outside with much success, with the back issues, and my stomach is a mess. My Pelvic diaphragm is congested and so it will be awhile, but I do believe what she is doing is working. I just know it will take a while but sometimes, I get the reproduction of symptoms, like the urinating tonight, and it confuses me. I will get the recurrence of pain, or frequency, thinking this is a good sign. Then it will go away, and I'll still have that dull ache in the rectum. Then, later on, after some treatments, frequency and higher pain again. I get the fascilitis or whatever it is called to, which I heard was good, but sometimes it is frustrating.

I get the pain worse when having sex. My penis really doesnt hurt anymore, but the rectum does...is that normal? I know muscles are all connected there, but I feel at times like I disappoint her. We have only been married just under a month, and she wants it a lot more than I can provide, and sometimes, I just don't want to. That's not like me. I know that's been the case with some men, but I'm not having ED issues or anything, I think it's just the pain that deters me.

I'm doing all I think I can do, relaxing, stretching, baths, PT...do I seem to be making any progress from what I have said?

Hope any or hopefully all of this makes sense, and you can answer the questions!

-Whoaday

[webslave]

Food intolerance is not as simple as, say, eating a slice of bread and 10mins later, boom, pelvic pain. With intolerance and food sensitivity it can take hours to days to see an effect from a specific food, and with gluten effects can be even more delayed, so that elimination of gluten can take months to show an improvement (if indeed you are gluten intolerant). If you suspect gluten, have a blood test via your doctor.

I do not think you really understand the concept of food intolerance and hypersensitivity. It is counter-intuitive in many ways. Since effects of foods can take days to show them themselves after ingestion, most people cannot tie the two together. Sometimes, only sometimes, you will see an effect from a food with minutes to hours, in which case it's easier, but even in these cases you'd be amazed at how many people cannot make the connection, even though it's staring them in the face.

That's why a careful elimination diet is essential. See the link above for more info, or buy this book by Dr Brostoff.

[Whoaday]

I bought the book already and I have been going through it. I was wondering how fast it would be, because sometimes right after i eat id get that pain in the hip or pelvis. That could just be from sitting. That makes me feel better. I've been tested twice for gluten issues negative both times.

But I heard that doesn't necessarily mean I am ok. I just don't want to keep making it worse...and if it takes days and days how can you tell what to do?

What were your thoughts on the rectum pain and what my PT is doing?

[Whoaday]

Also there are many foods that after I eat them I get headaches...soon after...would that be an allergy vs. intolerance? I was having bad bouts of runny stool for two weeks once which is why I thought it could be gluten but I havent had that since.

[webslave]

Headaches after foods is a good sign of intolerance. So is diarrhoea. But it's up to you to connect the dots, which is why the structured approach of an elimination diet is best, where you start off on lamb and rice only, say, and gradually introduce one food after another, as the book explains. Have you done that?

[Whoaday]

Not lamb, but I have done chicken and rice. I've been drinking soy milk too and I think I'm fine with that as well. And I've only been doing egg whites.

IT's just hard when the wife wants to go to all these restaurants and very few work well with this. Even if they are lets say gluten free, they will have lots of broccoli which is bad for IBS.

Really though, my chief complaint being the low stomach and rectum pain, we are aggressively attacking the low stomach triggers hoping that will helping and unclogging the pelvic diaphragm.

[Whoaday]

Hey guys,

How goes it? I just wanted to give some updates, as I guess its been at least a few weeks since I posted. I am still primarily dealing with the butt pain (anus, piriformis, sit bones). My PT and I are doing TP therapy and we are finding a lot of them in my abdomen and back. She was working on my back the other day, and it reproduced ALL my symptoms. I am in a bit of a flare and it's especially hard to sit today.

I'm doing relaxation, hot baths, tp, stretches, watching my diet, but as with most of you, it can be a bit frustrating. Some days I will believe I was making progress, other days not so much. I really feel my primary complaint is the sitting, and I was wondering if I could get specific thoughts from any of you on this. I mention it a lot and when people respond, they mostly mention everything BUT. Other than hot baths and stuff, what do you guys do to ease sitting? It's def. not something that keeps me bedridden but it is annoying. I know there is a connection with my mind and my body and I am working through that, but I am looking for some ease of symptoms in the meantime.

I'd like to hear from CARL D on this, as you told me you had to back of drumming for a "while" I don't know your story so I would like to hear what you did.

I know all about the things to do to start healing, but I would like to hear, if possible, what specifically you did that brought an end or at least some relief to the sit pain, even if its a certain type of cushion you may have used. I currently use something called the discreet seat which comes with handy little handles, to make it LOOK as if it's a briefcase (which, haha, give me a break, no one thinks its a briefcase).

I also use one at home I bought from the amazon store Webslave put together. Neither always provide relief. I realize it could be the pants I am wearing also which keep things tight, as I'm a youth pastor in a church and have to wear slacks...but I was wondering if maybe a different chair was used by some which has helped.

I also have pain in the perineum though I notice a direct correlation between sexual activity and that. I am recently married, just less than 2 months, and some weeks feeling good we will go 3 or 4 times and then the intense pain in the perineum hits. I am however able to stretch and massage that it seems and the pain goes away in 1-2 days.

I would just really like to be able to sit down without huge issues. I went to Wolverine (@ midnight) Star Trek (@ midnight) and Transformers 2 (@ midnight) and with all that was going on, I was aware of the pain, but it really wasn't that bad at all. Again, I understand the mind body connection here. I break it down like this. The PT is to correct and alleviate the pain. The Relaxation is to keep it from coming back.

I have ADHD and I know that makes me more like to have stress and anxiety. I have never been on any medication for stress and anxiety and I am not planning on doing so. I am making it through with occasional Quercetin, . Any accredited quercetin product and pollen aid. I don't know if that helps more than the placebo effect. Most days are ok, just days like this, and really rather recently where we are really hitting places that reproduce symptoms are causing me added pain.

I am going on Vacation today for 9 days, so I won't be back on here to check in, but I am hoping it brings some relief. I am going to maintain stretching and light tpr during this time as I don't want to flare on vacation.

Again, any response, especially from people who's main complaint was sitting, and how they came upon some or all relief, no matter how radical, would be appreciated!

Thanks,

Whoaday,

P.S. Carl, checked out your myspace page man, pretty cool stuff! You sound like a busy man, but someone who is having the time of their life even with this. I'd love to hear more of your story!

[Whoaday]

Anyone have any thoughts about what I wrote?

[Whoaday]

Hey guys,

Yesterday, I had an anaphylactic response (Not shock) to something, either eaten or inhaled. I had worked with a lot of cleaning supplies at work in a non ventilated area, and then came home for lunch. The wife made me strawberry muffins, and egg whites. I ALWAYS eat egg whites, but have not eaten muffins in a long time. About 20 minutes after eating it, my eyes started watering, then I had a rash all over my face that began to swell, and I noticed my chest was tight and it was hard to breath. The wife took me to the emergency room, and I got sent back immediately to be worked on. They gave me a lot of benedryl and it went away. To be on the safe side, I have prescription benedryl and prednisone for the next few days.

The reason I bring this up, is that I was reading about anaphylaxis, and while there was no mention to muffins, they did mention wheat and or strawberries, but also eggs specifically egg whites. I find it weird though that I have had them regularly since I came down with chronic prostatitis / chronic pelvic pain syndrome and this happened. But what was more interesting was it talked about degranulization of mast cells...I have seen that talked about a lot on the forum.

Is there a connection between my reaction yesterday and this condition? I did notice my chronic prostatitis / chronic pelvic pain syndrome symptoms were a little higher yesteday, though that could have been the drop in blood pressure I was at 65 over 80 at one point, and of course that it was a bit stressful.

So, is there a connection here, or just simply out of blue I'm allergic, highly so, to something I wasn't before.


Also of particular note, My tongue was not swollen, nor did my throat itch at all, which is typical of food anaphylaxis, so the doc said it could have been to much of the cleaning agent, but I had used it a good hour before I ate, and 20 minutes after eating, this came on.

Thanks for any thoughts you have.

-Brian